Narcolepsy is a rare chronic disorder of the brain in which a person has poor control of his sleep and wake patterns, often being sleepy during the day and suffering from sudden bouts of sleep. Narcolepsy is a medical condition and not simply a result of sleep deprivation. There is no cure for narcolepsy, but making certain lifestyle changes, trying a variety of medications, and being open about your condition with others can help you successfully manage your narcolepsy.

Steps

Part 1

Managing Day-to-Day Tasks

1

Work on your sleeping schedule. Developing good sleeping habits can help combat the daytime sleepiness associated with narcolepsy. There are a variety of habits that can improve sleep/wake cycles that may be effective if you're suffering from narcolepsy.

Stick to a sleep schedule, even on weekends. Our bodies have an internal clock that signals roughly when we should wake up and go to bed. If our sleeping habits are erratic, this clock is disrupted. Go to bed and wake up at roughly the same time each night, even on the weekends or on mornings when you do not need to be awake early.[1]

Establish a relaxing bedtime routine. This means engaging in calming behavior, like reading or a warm bath. Reduce exposure to bright lights or electronic screens, which are stimulating and can suppress melatonin production, a hormone that makes you sleepy. Your relaxing routine can help you separate sleep time from daytime activities that cause stress, excitement, and anxiety.[2]

Keep your bedroom comfortable. The ideal sleeping temperature is 60 to 67°F (15.6 to 19.4°C). If need be, invest in fans or air conditioners to keep things cool. Make sure your room is free from bright lights and loud noises; use blackout curtains to keep light out and use a sound machine or earplugs to block out loud noises. Keep the room free of any allergens that may disrupt sleep.[3]

While small naps during the day can cause sleep problems for many, they may actually be effective in fighting narcolepsy. Planning naps that last for 15 or 30 minutes throughout the day can prevent sudden bouts of sleep.[4] Napping before an important event can make it less likely you will fall asleep.

2

Avoid alcohol, nicotine, and caffeine. These substances can dramatically affect sleep cycles. If you suffer from narcolepsy, they're best avoided.

Nicotine is a stimulant. Smoking, especially before bed, can cause undue restlessness. Also, as narcoleptics fall asleep unexpectedly, there's a risk of falling asleep with a cigarette in hand and causing a fire. If you smoke, talk to your doctor about quitting. Not only does smoking affect narcolepsy, it can lead to a host of other health problems.[5]

While alcohol can help you fall asleep faster, the sleep you have is of lower quality overall. When you fall asleep after drinking, brain patterns indicate restlessness and people often report fatigue after drinking even if they've had enough sleep.[6] Alcohol consumption, even moderate consumption, is discouraged if you suffer from narcolepsy.[7]

Caffeine is often the go-to for narcoleptics as it's a powerful stimulant that can ward off sleepiness during the day; however, caffeine cannot replace sleep. It merely keeps us alert by blocking sleep-inducing chemicals in the brain and producing adrenaline. Caffeine stays in the body for a long time. It takes six hours for half of the caffeine consumed to be eliminated, so drink caffeine in moderation and avoid consuming caffeine in the afternoon and evening.[8]

3

Exercise daily. Exercise can be a powerful natural stimulant. It increases alertness during the day and helps promote health and wellness overall.

During breaks at work, take a 30-minute walk or do simple exercises to stretch the muscles. This can wake you up and ward off unexpected bouts of sleep during work hours.[9]

Be careful about when you exercise. While daily exercise can help with your overall sleep schedule, you should not work out before bed. Physical activity has a stimulating effect on the brain. Aim to get exercise in four of five hours before bedtime.[10]

4

Alter your diet. Certain foods and eating habits can promote sleepiness. If you have narcolepsy they're best reduced or eliminated altogether.

Large meals should be avoided three or four hours before bedtime, as such meals can disrupt sleep. Aim for lighter dinners, earlier dinners, or breakup dinner into two meals.

Relaxation techniques that involve refocusing your attention on something calming can also be used throughout the day. Autogenic relaxation involves repeating words and suggestions in your mind. Progressive muscle relaxation involves slowly tensing and relaxing each muscle in the body. Visualization involves imagining a calming situation or scene to try escape a stressful situation mentally.[13]

Part 2

Dealing with Others

1

Take safety precautions. In case you do fall asleep, it's imperative that you take safety precautions especially while undertaking activities that might be dangerous. You need to discuss your condition with those around you so they know how to keep you and themselves safe in the event of accidents.

Take stock of any situations in which you know you're at increased risk of falling asleep. Inform those around you of your risk, and let them know what kind of intervention, if any, you'll need.[14]

Avoid operating machinery or driving if you've been experiencing symptoms of narcolepsy that day or week. Talk to a doctor to get advice on how to handle driving and work-related machine operation with your condition.[15]

Cataplexy, a symptom of narcolepsy that results in sudden muscle malfunction and weakness, can occur spontaneously throughout the day. While injury during cataplexy is unlikely, make sure people who work and live with you are aware of the possibility of an episode. Let them know what precautions they may need to take to prevent an accident.[16]

A medical alert bracelet can be a good investment, as it will let others know what is going on if you fall asleep or experience cataplexy.[17]

If you're a swimmer, wear safety gear during all swimming activities. Never swim alone as an episode of sudden sleep or cataplexy can be fatal without a lifeguard or seasoned swimmer near by.

2

Discuss your condition. Narcolepsy a challenging condition not only because of its physical effects, but it can also be isolating emotionally, as people misunderstand it as simple laziness or disorganization. Being open about your condition, even when it's difficult to share, can help combat these feelings and reduced outside judgment.

You may find that most people don't understand, and write your condition off as fatigue. Explaining narcolepsy and its causes to friends and loved ones may help. Seek out support groups, either in your area or online, and have them direct you to pamphlets and reading material you can share with those around you.

3

Manage your narcolepsy at work and school. Narcolepsy can be difficult to manage if you work or are enrolled in school full time. As the condition can occasionally affect performance, open communication between you and your boss, teacher, or professor is important.

Narcolepsy can affect attention span, concentration, and short term memory. The good news is that, with appropriate accommodations, most people can function normally with narcolepsy. Teachers, professors, and employers should be informed of the condition and establish an agreement with you that allows you to manage your condition at work or school.[18]

For young children, narcolepsy can be particularly hard to cope with at school. If your child has narcolepsy, make sure you talk to their teachers as children are sometimes punished or scolded for sleeping in class.[19]

Sometimes, you may have to record meetings during work in case of unexpected sleep. Approach your boss to discuss this and make sure it does not breach company policy. If a recording device is not allowed, you could see if your business could supply you with a note taker.[20]

Public awareness and understanding of narcolepsy is still very limited. Make sure you go in with a variety of resources and information ready, as your teacher or employer may be unfamiliar with the condition. If needed, bring a note from your doctor laying out your needs.[21]

Part 3

Seeking Medical Treatment

1

Get a diagnosis. Narcolepsy is fairly uncommon, and it is important to be evaluated by a doctor for a correct diagnosis. Your doctor will give you a physical exam to rule out any other issues that may be causing symptoms similar to narcolepsy and it will be necessary for you to undergo specialized tests in a sleep disorders clinic.[22] Your doctor will also want a detailed medical history, and may ask you to keep a sleep journal.[23]

If your doctor suspects you have narcolepsy, you will likely have to undergo at least two sleep tests, the polysomnogram (PSG) and the multiple sleep latency test (MSLT).[24]

The PSG is an overnight test in which machines at a sleep disorders clinic will measure things like your heart and respiratory rates, electrical activity in the brain, and nerve activity.[25]

The MSLT measures your tendency to fall asleep during the day and determines if elements of REM sleep occur during waking hours.[26] They will also test how long it takes you to fall asleep.[27]

Other tests, such as blood or spinal fluid tests, may also be necessary to confirm a diagnosis of narcolepsy.[28]

2

Consider taking stimulants. Stimulants affect the body's central nervous system. They are generally the primary treatment method prescribed for those with narcolepsy as they can help you stay awake throughout the day. Talk to your doctor about stimulants and decide, based on your medical history, what the best route of treatment is for you.

Modafinil and armodafinil are the most often prescribed medications for people with narcolepsy. They tend to be less addictive than other stimulants (like amphetamines) and produce less mood swings. Modafinil given in the morning prevents sleeping during the day, but should still allow you to fall asleep at night. Side effects tend to be rare, although some patients report dry mouth and nausea.[29]

Some people may not respond to modafinil or armodafinil. Other options include methylphenidate type drugs, such as Ritalin, but these have been known to produce nervousness in patients. They also tend to be more addictive.[30]

Your doctor should discuss with you the benefits and drawbacks of any stimulant. If you have any questions or concerns, discuss them with your doctor.

3

Ask about SSRI's and SNRI's. If you suffer from symptoms like cataplexy, hallucinations, or sleep paralysis you might be prescribed selective serotonin reuptake inhibitors (SSRIs) or serotonin and norepinephrine reuptake inhibitors (SNRI's).

Prozac, Sarafem, and Effexor are all types of SSRI's and SNRI's. They can be powerful in terms of combating the more severe effects of narcolepsy, but have some undue side effects.[31]

Side effects include weight gain, digestive problems, and sexual dysfunction. If you're prescribed SSRI's/SNRI's and experience any side effects, talk to your doctor about adjusting the dosage or switching meds.[32]

4

Get a prescription for sodium oxybate. Sodium oxybate can be incredibly effective in combating cataplexy. It also helps with nighttime sleep and, in high dosage, can prevent daytime sleepiness as well.[33]

Sodium oxybate should be taken twice daily: one at nighttime, and one four hours later.[34]

Your doctor will want to know your medical history before prescribing sodium oxybate as it can cause serious side effects. While doctors only prescribe medication when they think the benefit outweighs the risk, you should be aware of potential drawbacks and discuss them with your doctor. Nausea and bed-wetting have been reported. If you are a sleepwalker, your sleepwalking may become worse. Talk to your doctor if you experience any side effects.[35]

Never take sodium oxybate with other sleeping medications, narcotic pain relievers, or alcohol. This can cause potentially fatal side effects, such as difficulty breathing and coma. If you're prescribed any other medications while taking sodium oxybate, ask your doctor about the possible interactions.[36]

5

Seek out therapy and support. Narcolepsy can be a difficult condition in that it can cause psychological effects. These are due to a combination of factors, such as the effects of the disorder on the brain, public stigma, frustration over the symptoms, and trauma caused by sleep paralysis or hallucinations.

Frustration and low mood are often reported in narcoleptic patients, and such symptoms tend to persist longer if not addressed.[37] If you're experiencing a chronic low mood, find a therapist in your area. You can do this by checking with your insurance provider or searching online. If you are a college student, your university might provide free counseling.

Many people with narcolepsy feel frustrated by the lack of understanding. A sense of solidarity can be found by seeking out support groups. Ask your doctor or therapist about where to find support groups. If there are none in your area, many forums exist online where you can voice concerns and frustrations with others.[38]

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Tips

There is no cure for the condition but the symptoms can be managed to ensure you have a better quality of life.

Medications are prescribed to address the major symptoms of narcolepsy such as sleepiness and cataplexy. This is usually combined with lifestyle modifications and counseling to achieve desired effects.

Be careful when taking over-the-counter medications for common ailments, like colds or pain relief. These can sometimes have stimulating effects and should be avoided if you have narcolepsy.